This blog is my resting place for all of my journal entries and letters I wrote to my brother Jim as he was dying of Creutzfeldt Jakob Disease. I miss you, Jim and it's not right that you aren't here anymore!

About Me

Saturday, August 7, 2010

I am trying to figure out why I am so incredibly worked up about the situation and I think that, for me, it comes down to the following.

When I was tested for CJD and the genetic markers for it I knew that the test results would change our lives forever if they came back positive. What I did NOT realize at the time, though, is that even a negative result is life-changing. The guilt that follows is incredible and is something that family members carry around daily and wrestle with for years, if not forever.

There is also that Second Chance feeling that occurs, as if the surviving sibling feels like they have an extraordinary obligation to fulfill some Higher Calling, to right the wrongs of the world. I wear no cape and claim no superhuman abilities, but I do feel the overwhelming obligation to make the world right. When I see injustice I cannot stand idly by. It seems physically impossible. It doesn’t even feel like a choice to me. Some may say it is a calling since it is something I have done since childhood, but the intense PUSH to ensure that those who cannot speak for themselves find a voice through me is no longer optional.

Tonight I remembered that day, two years ago, when I got the call from the Dr and heard my test results. I remember thinking that there was nothing that he could say that would make me happy. How could I be happy when I get life and he got death in the Great Cosmic Lottery? Either way it’s a punch in the gut. I cried when he told me. It was The Great Way I Failed Him for the third time. A good sister wouldn’t have let him die in the first place and if she couldn’t have stopped it then she would have at least went with him. As a consolation prize she could have, at the very least, had the disease, too. How could I possibly feel GOOD about that?